Years ago, shortly before I received a tentative diagnosis of vulvodynia by my main gynecologist, I started looking for support and information about what causes vulvar pain. The Camera My Mother Gave Me is one of the earliest books I read about the topic. At the time, it was one of a very few books available that talked about vulvodynia with any amount of detail. Most of my other sources were scientific & peer reviewed medical journal articles or anecdotes from the internet. What sets The Camera My Mother Gave Me (henceforth I shall refer to it as TCMMGM) apart to this day is that unlike informational resources that talk about treatments, it is a memoir. It’s a first-hand personal recollection of author Susanna Kaysen’s life with vulvodynia over about two years.

Yes, you read that right, the author is Susanna Kaysen – this is the same author made famous for her previous memoir, Girl, Interrupted, which was made famous by Hollywood – though I understand the film distorted the facts in the name of artistic license. However, I have not read Girl, Interrupted and will not be talking about that today. Whether Kaysen’s experience with psychiatry in the 1960s has anything to do with her vulvodynia later in life, I cannot say.

So, TCMMGM is both an easy read and a hard read for me. How is this contradiction possible?

It’s easy because it’s short. It’s only about 150 pages with paragraphs double spaced. If you’re interested in reading it, it probably won’t take more than a few hours to finish; maybe a day or two tops. Kaysen uses everyday language instead of heavy academic jargon, so you don’t necessarily need to be a doctor or be familiar with vulvodynia in order to follow along.

But it’s hard because every time I read it, for all the progress I’ve made and improvements I’ve seen over the years, I am instantly transported right back to square one – that daunting, hopeless, barren place where the walls of pain obscure every available path. It’s hard because when I read it, I remember everything… the questions unanswered, the ignorant doctors, the uncertainty …the pain. I’m in my early 20s again and I don’t know what’s going to happen to me.

Another reason this book is so hard for me because no one understands this book unless they have vulvodynia. Perhaps I’m not giving folks enough credit. Perhaps that’s an exaggeration… but not by much. TCMMGM has received mixedreviews, many of them negative. The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina. Frightening, too, to have to think about an area that’s supposed to be capable pleasure feeling instead only pain. If readers are frustrated with Kaysen’s lack of progress, that may be because Kaysen herself was frustrated and was deliberately trying to convey that feeling – trying treatments she felt comfortable with, avoiding the ones that she didn’t want but that were nonetheless pushed upon her over and over again. When she opened up about her vagina and all its problems, Kaysen also left herself open to invasive personal questions, “Why didn’t she do this, why didn’t she try that.” If the book feels unresolved at the end, that’s probably because vulvodynia is itself a chronic problem, often with no clear resolution. There are still loose ends by the time the book ends, because in Kaysen’s real life the struggle with vulvodynia was ongoing.

So what’s the book about?

The briefest answer is to say that it’s about Kaysen’s vagina. One day, mysteriously, “Something went wrong with it” (3.) Everything else follows over about a two-year period.

A more comprehensive answer is to say it’s about Kaysen’s experiences during a time when she had to re-evaluate her relationship and sexuality as she navigated the gauntlet of modern medicine in search of answers for her debilitating vulvovaginal pain.

Kaysen began experiencing vaginal pain that “Felt as if somebody had put a cheese grater in it and scraped” (3.) The reasons for this pain are never made 100% clear. We learn that Kaysen had a bartholin’s cyst surgically drained some 20 years earlier, and the pain felt intense at the surgical site – but the pain radiated to other areas of her vulva as well. She was approaching the age at which many women enter menopause (though I could not tell what her age was when the pain started.) Her gynecologist initially misdiagnosed Kaysen with a run-of-the-mill infection and prescribed some treatments that probably didn’t do any help. At some points, Kaysen explores the possibility of psychosomatic causes.

This pain interfered with her everyday activities like “Wearing pants” (8), “Taking a bath” and “Too much driving – it hates that” (146.) She maintains a pain diary, measured on a scale of 0-5, with her pain frequently hovering around a 2 and sometimes spiking above 5. She had good days and bad days.

The pain interfered with her sex life, to the point where her sex life and her relationship with her own body fundamentally changed. Very early on, Kaysen tells her gynecolgist,“Listen, I said, everything’s getting worse. I’m really having trouble with sex. My vagina hurts all the time now. If I have sex it hurts more, but it never doesn’t hurt” (9). Unfortunately an expanded definition of “Sex” did not adequately address Kaysen’s problems:

“I tried a lubricant named Astroglide that was more glue than glide. My boyfriend and I tried all sorts of varities of sexual activity: very quickly, so it wouldn’t have time to hurt; without moving, just in there; only fingers in there; nothing at all in there, only outside. Whatever we did, it hurt” (10).

She was not even able to enjoy arousal in and of itself, because “Just getting aroused hurts” (55).

When her pain first manifested, Kaysen visited multiple doctors specializing in different fields. She lived in Boston at the time, which is home to some real-life vulvovaginal specialists. She visited her gynecologist, an alternative medicine practitioner, an internist, a vulvovaginal specialist, and a physical therapist. Some of these doctors pass her off to other doctors – notably, when her primary gynecologist was stumped, Kaysen felt that he was “Washing his hands of me! After twenty years” (9). She was tentatively diagnosed with vulvar vestibulitis and tried multiple treatments – conventional western style and alternative – but none of them were right for her. Kaysen was acutely sensitive to side effects, and in some cases the side effects just made things worse. Even physical therapy, a treatment that I had very good luck with, only set her back farther. (Having a crummy physical therapist who ignored her wishes probably didn’t help.) Other treatments, notably surgery, she did not want to try, though the doctors and her boyfriend pushed and pushed.

The doctors left Kaysen with a lot of unanswered questions about vulvar pain…

With her gynecologist:

So what is it? I asked him.
I don’t know, he said
…
But what is it? I asked him. What’s wrong with me?
I don’t know, he said. (9).

With the internist:

But why does it hurt all the time? I asked. Why does it hurt when I’m not having sex? When I’m sitting on the sofa?
I don’t know, said Doctor Matthew (21).

With the vulvar specialist:

Why did this happen? I asked him.
Eh, he said. He shrugged.
What is it, anyhow?
Eh, he said. He returned to the stool and resumed his Q-tip (28).
…
What’s the matter with me?
You have a sore spot, he said (30).

It goes on like that in some fashion over the whole book. Just as it continues to go on day after day in real life for still all too many women.

[Trigger warning for rape]

Kaysen’s nameless boyfriend was not sympathetic to her situation or open minded about the kind of sex he wanted. For two years prior to the events described in TCMMGM, Kaysen and her boyfriend had enjoyed a sexual relationship. Her partner had a strong interest in sex – “It was one of the things I had loved most about him” (95), though they never say “I love you” to each other. But when sex hurt, Kaysen began to lose interest in sex. While they stayed together for the first year that she looked for treatment, the boyfriend nagged and coerced Kaysen to have sex with him – even if it meant she was performing against her will. Readers of this blog would probably recognize what Kaysen describes as rape. She didn’t say no, she acquiesced under pressure, but certainly she stopped giving any kind of enthusiastic consent. She spends days after sexual activity coping with the painful after effects. Kaysen herself never uses the word rape to describe what she went through with her boyfriend, even when it caused her to disassociate during the act and left her in physical pain for days afterward. When asked by a biofeedback specialist if she had ever been sexually assaulted, she answers “No,” but when the question is rephrased to “Have you ever had sexual relations against your will,” Kaysen says “Yes” (82). When she recounts the last straw to her friend, Kaysen questions herself, her boyfriend’s actions, her own fear at the time, and what actually happened.

[/TW]

Even after evicting her boyfriend, Kaysen continues to feel pain long-term. It wears her down over an extended period of time. “Low-grade pain is debilitating in a subtle way” (121.) Eventually she loses interest in sex, and this is a painful experience for her, but in a different way. When Kaysen talks about sex and eros, it’s clear to me that prior to these events, she really did enjoy sexuality in her life. For her, it was a source of unpredictability. At one point, after throwing her boyfriend out of the house and struggling to rediscover pleasure from what once felt only plain, she tells a friend, “When eros goes away, life gets dull. It’s as if I’m colorblind. The world is gray” (125.) She eventually decides that the best course of treatment is to stop treatment. Eventually she makes a limited, partial recovery… But by then her relationship with her vagina, vulva and her own sexuality are fundamentally changed. Maybe forever.

Kaysen’s language may be plain and easy to understand, but it’s not without criticism. She uses frequently the word “Vagina” even though a more accurate word is “vulva.” Or maybe it is accurate for her to describe her pain as vaginal, since with vulvodynia the pain can radiate and spread beyond the vulva. In practice, when the pain feels like it’s everywhere, it can be very hard to pinpoint. One social construction argument against female sexual dysfunction as a valid diagnosis is that women with sexual problems may not be educated enough to understand their own anatomy; however Kaysen demonstrates that she is aware of her own anatomical structures and function.

Overall though, I would hope that readers accept Kaysen’s idiosyncrasies and simplified language. She uses other inaccurate terms, most likely as deliberately as she chooses to forgo with quotation marks when recalling conversations. She refers to her doctors as the “Vulvologist” and the “Biofeedbackologist” instead of as “The vulvar specialist” and “the physical therapist.” But when you’re encountering these specialists for the first time, perhaps not knowing such fields even existed before, what else are you supposed to call them??? The title of the book itself is an error. The title is based on Kaysen’s memory of a scene in a movie, with some artistic license exercised. (According to this interview with Kaysen about TCMMGM, technically the title of the book should be The Camera My Father Gave Me.) She receives materials from the “National Vulvodynia and Vestibulitis Association” instead of National Vulvodynia Association. And so on…

But this is her story in her words. I hope we can forgive her for taking liberties with some of the language – though it does have some disableist moments that are questionable and perhaps not so flexible.

I don’t know if Kaysen ever found relief for her pain in the years since TCMMGM came out, though it seems unlikely. Around 2003, the following was written about her on Salon.com:

Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn’t so much lost or won her battle; rather, she’s signed a treaty, with massive concessions. “Celibacy is a great cure!” she said wryly in a recent phone conversation. “I wasn’t interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire.”

So who might be interested in reading TCMMGM? Who might benefit from exposure to such a taboo subject and who should approach the book with caution?

If the reviews online are any indication, many readers will be disappointed and frustrated with the book, but a few will strongly emphasize with what Kaysen went through. I am one of those people, and would like to see more people read and attempt to understand Kaysen’s situation. The frustration that so many reviewers are left with may be exactly what readers most need to feel, to better understand the frustration that still too many patients with vulvodynia have to deal with when running the gauntlet of modern medicine in search of adequate treatment.
The book is a memoir of one woman’s experiences with what is probably vulvodynia, and therefore it should not be taken as an advice or how-to book. This is all stuff that happened to Kaysen. It’s not necessarily going to happen to you. Some readers with a history of vulvar pain may find the book depressing because at so many points, things appear hopeless. Others take comfort knowing that they are not alone. It’s been a few years since the TCMMGM came out too, so there have been some advances in treatment since Kaysen conducted her own research and treatments. Your mileage may vary.
TCMMGM is short and small, but it’s not light fare. Although it has moments of dark self-deprecating humor, it’s not something to read if you want to feel good (except perhaps through schadenfreude.) It’s kind of a downer, to be honest. Because Kaysen describes a rape and post-rape scene with frank language, the book may be triggering to those with a history of sexual assault.
TCMMGM is available online from several retailers and it is available in E-Book format for Kindle. If you’re still interested after reading all this, then may I suggest that you make a purchase through the NVA’s book list, since they have a referral program set up for financial support.

As with all reviews conducted at Feminists with Female Sexual Dysfunction so far, I had to pay for TCMMGM with my own money, and I receive no compensation for posting a review of it.

As soon as I read the first paragraph of this blog entry, I went on the library website to order this book. I decided not to read your review until after I had read the book. I have finished the book now, and I’m glad that you mentioned it to the blog world – I’ve never heard of it. I agree that for some it will be upsetting and for others comforting to know we aren’t alone. I also agree with you that for me it was both. The most upsetting parts to read were her exchanges with her boyfriend. His attitude, telling her that she just didn’t love him enough, infuriated me. It made me so sad and more aware that there must be so many other women who not only have to suffer with whatever vaginal pain they have (include all terminologies here), but also have to suffer with unsupportive, and even abusive partners. Thanks for telling us about this book. You may be right that only people with (insert correct terminology here) can understand, but I think this book is important for those who aren’t suffering from it as well. It might get through to some people and give them a hint of what we’re dealing with. Your reviews are always so thorough and I couldn’t begin to comment on every part of the book the way you did, but thanks for letting us know about it. It was a hard book to read (emotionally), but I’m glad I read it.

I have the exact same problem she has.
past bartholin surgeries, and now pain radiating from the surgery site. But I think it’s called pudendal neuralgia, not vulvodynia, in my case. I have no burning pain. Just stabbing pain. I am so depressed, there are no words. but at least there is someone else out there who has my problem

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